LUCY'S LEGACY
@CYSTICROCK3T
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(lucy's dad) In memory of Lucy, Trying to raise awareness and funds to help others with cf #HOPE4LUCY #CURECF
bham uk
Joined July 2012
5 yrs it's been since the angels come for you, to be with you again would be a dream come true.... We miss you and love you xxxx
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Your family won't know how you feel about organ donation, unless you tell them @NHSOrganDonor
https://t.co/cBgJDQCwRc
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Here's the link to the article mentioned during @katieguacamole & @zcelliott 's talk today at #UKCFC if interested https://t.co/2s2Sgxkca1
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Need to start some training so it seems.. It's been mentioned about doing a john o'groats to lands end cycle ride for Lucy's charity!!
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Some good news today Lucy's brother Richard is going to start on orkambi hopefully the side effects don't get too bad!! #daddyswithangels
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Our thoughts and prayers go out to those families who have lost loved ones in the tower block fire in London #Towerblockfirelondon
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Good morning Thank you shoutout too @gemmas1977 for the continued support on this page every week even though I've been slacking on here!!
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Great infomative video on CF
My first YouTube video is an important one, please watch! https://t.co/Lc4hFwsCZP 😊 #CysticFibrosis #CF @cftrust @CFAware
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Just #remember before you #judge not all #disabilities are visible! #chronicillness #Cysticfibrosisawarenessmonth #CysticFibrosis @cfaware
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Petition: Provide Orkambi for Cystic Fibrosis patients in England.
petition.parliament.uk
Orkambi (ivacaftor and lumacaftor) is a gene therapy based drug used to help treat CF for the most common gene (deltaF508). Use in Cystic patients can reduce lung function decline from 2.3% annually...
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Vic is having a engagement party on Sat Luc! Wish you were here with us, Vic and you would be going crazy Getting ready bet!!! Love u xxx
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My passion. My cause. #cureCF #CFawareness I'll talk to anyone who will listen about how to support @CF_Foundation and it's mission.
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Morning guys another monday upon us, why does the weekend go so quickly? #lucyscharity #hope4lucy #curecf #lucyslegacy
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